Dance with me

This post started life as a cynical attempt at clickbait. I was intending to just make a bunch of stuff up in the hope you’d come here and, er, do what exactly? Read it, I guess. Didn’t really think this one through, did I?

But since you’re here I might as well hold up my end. So grab hold–not there: careful where you put your hands!–and join me as we take a whirlwind trip through autism.

First off, before we figure out if you might be autistic, what the heck is autism? Yeah, kind of important to know what we’re talking about before we start.

What the heck is Autism?

Autism is big. Really big. You just won’t believe how vastly, hugely, mind-bogglingly big it is. Oh, wait, that’s what Douglas Adams wrote about space. Silly me! But seriously, autism is a really broad diagnostic definition covering a whole bunch of stuff from developmental delays to sensory processing/integration issues.

The most recent definition in DSM-5 (2013) brought together everything from Kanner’s original very narrow definition right up to Asperger’s Syndrome (which still exists as a distinct diagnosis in the other main diagnostic manual, ICD-10, the primary one used in the UK) and the catchily-named PDD (NOS). All these come under the umbrella of Autism Spectrum Disorder.

We usually just call it Autism. Partly because the whole “Disorder” thing puts out a negative vibe, man. No, really. It’s true, it does. When was the last time you associated something positive with a disorder? “Hi, honey, I’m home. I got a disorder!” Yeah…

What isn’t Autism?

There’s a lot of articles, blogs, books, videos and rumours about autism. Some are very, very good; others are very, very bad. A few are so awful I daren’t even speak their name in case the ground splits and they appear out of the flames. There’s a lot of stereotypes, there’s a lot of misunderstanding.

Autism is not:

Rain Man

brain damage

curable

a tragedy

the end of the world

a judgement from god

caused by vaccines

the result of bad parenting

a super power

the next step in human evolution

Sheldon Cooper

a disease

anybody’s fault

What about the list?

I hadn’t forgotten: I just like to be thorough in laying the groundwork before I get started. It’s an autistic thing.

I’m going to list some headings and put some descriptions underneath. If you read it and think some of these describe you then there’s a chance you might be autistic. Actually, if you think about it logically, there’s a chance you might be autistic whether you read the list or not. So you might as well read it: what have you got to lose?

Incidentally, thinking about it logically is an example of what we call a “stereotype” that gets applied to autistic people. A lot. I’m not sure we’re really any more logical than everybody else; it’s just that it gets picked up and commented on when we do it. That’s how a lot of stereotypes got started, and why a lot of them aren’t really true.

1. You took an online test

Hey, don’t laugh. More than a few autistic people got their first clue that they might be autistic from taking one of these. The tests aren’t definitive, they aren’t a diagnosis, they rely on your own subjective judgement. But many of them are based on actual screening or diagnostic assessment questionnaires.

So they’re not Buzzfeed quizzes; they do have some real value. Just don’t take a single isolated test score as saying anything definite one way or the other. It’s an indication. If it suggests you might be autistic then follow it up. Read about autism: the best place to start is articles, books and blogs (like this!) written by people who are themselves autistic.

2. You were the “shy kid”

I was the shy kid. At school, out of school, through university, at work. The loner who would never go up to someone and start a conversation. The one who sat in a corner or on the edges, alone. You get the picture. Maybe you were like that? Maybe you have also carried this label with you.

Shyness is a sign of discomfort with social interaction. The discomfort might be caused by inexperience, a lack of confidence, or a lack of understanding of the conventions governing that form of behaviour. It might be that being the focus of attention makes one anxious.

When I was a kid autism meant developmental delays. the widening of the diagnosis and addition of Asperger’s Syndrome–the whole Autism Spectrum thing–wouldn’t come along until years later. So there’s a lot of us in my generation who didn’t even have a clue until we had kids of our own who got diagnosed, or when something like this list started us thinking about the possibility.

3. You did your hobbies differently

What does that even mean? Well, anyone can be into Lego, say, but for me it was about building and arranging the models into mostly-static scenes, as opposed to enacting stories and playing with them like regular toys. Although my regular toys, like a small collection of cars, got classified and arranged too. And then there were my books, all organised like on library shelves.

Our interests tend to be passionate, even all-consuming and obsessive. Like people who are fanatical followers of some football team. But it’s not generally the subjects of the hobbies that are unusual so much as the ways we carry them out. We might concentrate on a specific aspect, like shape or colour, rather than the whole. We might take a common interest like dolls but focus on 1950’s fashion with the outfits and accessories.

You’ll often see the hobbies of autistic people referred to as “special interests”. I’ve used the phrase myself in the past. It’s not a good phrase: it turns something that is a natural behaviour into something pathological, which is one step away from labelling it deviant or abnormal. So don’t do that.

4. You were always being told to sit still or be quiet

You felt an urge to move, to “fidget”, in class or other places where the adults or teachers expected you to be still and quiet. Maybe it was rocking, maybe flapping your hands, maybe tapping your fingers on something, maybe bouncing your leg up and down. Or it might be that you repeated words and phrases you’d heard, or that you had said yourself. All sorts of things. And you’d get the teacher (or somebody), like in Pink Floyd’s The Wall, “Stand still laddie!”

We call it “stimming”, the movements or speech fragments are “stims” and autistic people use them to help regulate and manage their sensory systems. Oh, and they can also be a means of expression equivalent to smiling or crying.

Forcing an autistic person to stop stimming because it makes you feel uncomfortable to see them moving or hear the “meaningless” (to you at least) babble is like expecting somebody non-autistic to sit in the middle of a nightclub and still follow everything you’re saying to them without getting the least bit distracted by all the lights, noise and people around them.

And while we’re here: eye contact. Just don’t, right? Imagine standing in the middle of a road and watching a bus speed towards you, closer and closer, and you’re not allowed to move. That’s how looking into somebody’s eyes feels to me: it makes me feel very threatened and I want to run away. Like right now!

5. You never had proper friends

I had friends at school, growing up. Except I wonder whether I really did. I saw how other people interacted, how they would do stuff together. And I only got that with maybe two people. Ever. Things like being invited to go to their house, hang out, do stuff with them.

I’d associate with people, and they’d be talking, and I would realise that although I spent time with them they knew so much more about each other than I did about them. I wondered what the secret was, what I was missing, why I couldn’t get closer.

Until recently my “friendships” fell into two categories. Ones where people took advantage of me, my naivete and longing for human contact to ask things of me that I would feel obligated to fulfil. And ones where I trusted them and opened up, but they never confided anything in me. Neither was balanced, symmetrical.

The combination of a strong desire for social contact and an often poor understanding of how to achieve it means autistic people can be vulnerable to being taken advantage of. Driven by the need for friendship we may not take an objective view of somebody’s motives and trust someone who ends up hurting us.

6. You didn’t really get the feels

Emotions are curious things; I never used to be aware of having many of them. I might be sad or happy or afraid or, most of the time, kind of neutral. And for many years that was it. Other people would talk about a whole range of feelings that I couldn’t relate to.

It took me a long, long time to recognise that I felt certain physical sensations in response to particular situations. These were emotional responses, and over time I learned to give names to the physical feelings. I still don’t get much nuance in my emotional range, but I do recognise most of them now.

With that recognition came the realisation that I had always felt these emotions. It was just that I didn’t recognise what they were so I had no way to tell anybody I was feeling that way. It was shocking to find out how long depression and anxiety had been with me, and that I had not been aware.

There’s a name for this: alexithymia. It’s a fancy medical term for inability or difficulty identifying and expressing emotions. It’s not uncommon among autistic people. The stereotype that we are unemotional is not true: we can be more emotional than the average person but that doesn’t always show because there’s this disconnect between having the emotion, recognising it in ourselves, and being able to express it.

7. You got bullied for being different

The effort I expended over so many years trying to fit in, act like the people I saw around me, was immense. Why would I do that? Because I learned early on that being myself brought the unwelcome attention of teasing and bullying. I don’t really know why I say teasing and bullying: they both made me feel so bad I failed to see any difference.

All those things I did naturally: flap my hands, repeat words out loud, walk on my toes. And things I was interested in that seemed unusual. I became inhibited, suppressed those things that marked me as a target for the bullies.

I learned to conform, to mimic. I wore a mask and played the role that was expected of me. Those inhibitions, that suppression of my natural actions, caused me a lot of stress and harmed my mental health.

Ironically, there’s a fairly common therapy used on autistic children that has as its goal the suppression of autistic expression and its replacement with mimicry of non-autistic behaviour: it’s called ABA. And it seeks the same end as the bullying I was subjected to. The same end that I have spent years trying to undo because of the harm it was causing me. Surely it would have been better to prevent the bullying and accept my differences?

8. You remember all the details

I’ll start by saying that if I had a penny for every time I’ve walked from one room into another and forgotten what I came for, I’d be a rich woman! My short term memory is shockingly bad. But at the same time I can recall scenes from decades ago with amazing clarity and detail.

I have a kind of selective memory. Words, like things people have said, hardly persist at all. Never ask me to recount a conversation, for example. But other things like places I’ve been, things I’ve eaten: they can last practically forever with such clarity that I can dip into the memory and relive the experience.

Many autistic friends of mine remember many of their experiences very clearly; this is not always a good thing because the way autistic people often get treated means we experience a lot of bullying, intolerance, abuse and lack of caring. Why do you think we make such an issue about acceptance?

9. You hate crowds, noise and bright lights

You do? Welcome to the club. Except I don’t normally like clubs on account of the crowds, noise and bright lights. I have times when I want to be social and hang out with people, and times when I need solitude. Some of it has to do with how tired I feel because being sociable takes energy.

You’ve probably heard that autistic people are unsociable loners: another stereotype. While some of us undoubtedly are, most of us are as sociable as anybody else. It’s just that we face obstacles that make it more difficult for us to get there and take part.

Autistic people are generally good at learning to understand how to navigate the social environment, but things like conversation often take a bit of analysis and thought, so we need a bit longer to put words together and respond. Also, some of us aren’t able to communicate via speech which presents a new set of obstacles when those needs aren’t accommodated.

It takes effort to participate in conversation. Many autistic people have sensory difficulties that mean we don’t pick up every word, even one-on-one. We have to fill in the blanks, and use strategies such as lip reading to make up for what we miss via hearing. When there’s background noise, or several people taking at once we can easily lose track.

And did I mention the effort it takes? Believe me, if an autistic person is putting themself through that to spend time with you they really want to be there. Because even more than the social interaction obstacles and anxiety we often face, it is so exhausting you would not credit it. If we didn’t want to do it we would not put ourselves through that.

10. Somebody autistic tells you you might be

Who do you think of when you consider the people who know most about autism? Doctors? Scientists like Simon Baron-Cohen and Uta Frith? Even parents of autistic children? Yes?

No. Nobody really understands autism like somebody who has lived with it their whole life. Autistic people themselves are the real experts. It’s like the difference between somebody born into a culture and some sociologist from outside who lives alongside for a few months and then writes their PhD thesis about it.

One thing we know instinctively are the little signs of autism. After all, we’ve seen them in ourselves and often in our own children (autism is genetic in case you didn’t know). If we tell you we see those signs in you, trust us.

That could be me – what do I do next?

Like I said way back, a couple of thousand words ago, the best thing you can do is find people who are actually autistic and learn from them. Read what we’ve written about our own experiences, learn from the lessons we learned as we grew to understand ourselves.

The key thing about autism is that it is the way your brain functions. Without it, even if it were possible to separate it, you would not be the same person. The large majority of autistic people–those who have not internalised the negative stereotypes and hate speech–accept being autistic as something at the heart of who they are: their identity. That’s a key reason most of us prefer identity-first language.

You’ve come this far: you’re aware of autism and, I hope, you’re beginning to understand it. If you can understand it, you can understand and accept autistic people for who they are. Not as people with a disorder or an affliction, but as people who might be different from you but who are deserving of the same acceptance, respect and rights as everybody else.

Well, it worked – I clicked on it! 😉
Frankly, at the moment I will click on anything that says “Are you autistic? Read this and find out” because, well, I’m trying to find out (and blogging about it btw.) This post is really nicely written, with humour – I liked it!

Reblogged this on Blinkie Frustrations and commented:
Funnily enough… all of these apply to me.
But as having grown as a girl, as a shy bookworm, none of these caused enough alarms to sctually get a diagnosis while still a child. i think at least.

Eight out of ten apply to me, one and six being the exceptions. I also work with adults with Autism, mainly Asperger’s Syndrome and I see myself in a lot of the people I work with, only not to their extreme. Thank you, this was very insightful.

I enjoyed your post. My gorgeous seven year old has autism. (on the old system it would be Aspergers). You certainly seem to know a lot about it. I guess I don’t want to tell my son too much about it because then he can revert to the excuse – “I can’t do that. I’ve got autism!” I actually don’t know many adults with diagnosed autism but have possibly run into a few based on the descriptions you’ve provided.

Thank you Sarah. I’ve picked up a lot through reading and talking to other autistic people since learning I was autistic several years ago.

It took a little time to adjust to the knowledge and integrate it into my sense of self, my identity. And I have probably been guilty a couple of times of using it as an excuse to avoid stuff.

But on the other hand knowing I’m autistic has allowed me to understand myself, my strengths and weaknesses, much better. I can use this to adapt the way I approach things so that I avoid some of the obstacles like sensory overload, or things that trigger my social anxiety. It has enabled me to cope better day to day.

So much of this, is me in a nutshell. I still walk on my toes when I’m not thinking about it (I used to get mocked for that in school; kids actually thought I was levitating because of the way I walked – they said I floated). As for my hobbies… well, you know what I’m like about those!

I’m a bit of a mix: I’m either erratic and eccentric like The Doctor, or I’m emotionless and analy logical like a Vulcan. When I was little I actually thought that my real (alien) family had abandoned me here on earth, because I truly didn’t understand the behaviours of human children.

I could write an entire blog post about my childhood of feeling otherworldly; I probably shall at some point. As always though, you’ve nailed it x

Thank you sweetie! This post came out of an editorial review I did on yet another article about the symptoms of autism. I thought it was time to move beyond the stereotypes and put things in terms that actually mean something in the context of people’s lives. As always, I’m happy to hear that my experiences, which form the basis for what I write, resonate with others. xx

Thank you for writing this. It was very insightful. More than one time I actually thought “whoah, were you reading my mind?” 😀
Very spot on!

At age 18 I got diagnosed with ADD. I’ve had years of therapy which has been extremely helpful to me. I’m now 31 and my current doc suspects I’m autistic too. I haven’t tried to figure it out yet. But I like to read about it and get to know things from others’ perspective. (Sorry I’m not a native speaker)